Count your blessings!

                We spent yesterday at home the entire day. Phillip began a new behavior that was one of my fears and a messy one. I won’t go into detail with it but I will say if you’re an autism parent you probably have a few things you can think of that may have occurred. If you’re not an autism parent I am sparing you from the details simply because it’s for the best. It was a day of not being able to take my eyes off of him and I wasn’t completely successful at that and hoping today does not go the same way.

                What I did have success at yesterday was beginning to create a book of pictures to order from MyPublisher for myself. A book of some of my favorite pictures that are stored in my computer from the last 4 years. I don’t look back much and not because I don’t want to, I just don’t take the time very often and I prefer to keep moving in the forward direction as it keeps my mind focused on today. I started from just before Phillip was born and going through the pictures was a bit more emotional than I expected. I remember the changes that occurred with Phillip and how fast they hit but when you see pictures before the changes it’s a bit hard to face.

                He was smiling for pictures and enjoyed the camera so there were many more pictures of him posing than I recalled. He doesn’t do that anymore and I have to take ten pictures to get just one of him looking at me or smiling. He was alert and responsive to things and I was reminded when he was just a new born at how alert he was, it was impressive. He was eating all different food and using a fork and spoon to do it. He drank from a cup, not regularly, but he had the ability. He was finger painting and getting into it without the annoyance of the paint on his hands. He was in a swimming pool full of water from the hose that was very cold, no pools these days no matter what. We put an addition on our house and his crib was in the living room. Through all the noise he slept in his crib without noticing the chaos around him. He always had clothes on and loved new shoes and footie pajamas, no clothes these days. We had a basket ball court on the driveway and he would sit on a bench and watch his siblings and their friends play ball. No sitting to watch anymore. All of these things don’t happen anymore and it was hard to look back and be reminded of a few things that have changed.

                Not hard because he doesn’t do them anymore but hard because at a point in the pictures I saw clearly when it all came undone. His face became blank in a lot of pictures and your typical milestones stopped. No more food, no more clothes, no more random people holding him, no more looking at the camera, no more messy finger painting, no more funny dance moves, and he lost his healthy chub. He was never very chubby but he did have a healthier appearance. At this point in the pictures it all just stopped, just like that and what really got my attention was the decline in people in our lives. The people in the pictures full of smiles with a little boy on their lap disappeared. Holidays were still there but most of the pictures were home and alone. It became extremely hard to just take him anywhere so I had to stay behind a lot or if I was able to take him somewhere it was short lived, we had to stay close to home much of the time. Many people didn’t understand I couldn’t just do whatever I wanted and deal with it. They didn’t understand the smallest things caused him stress and that stress didn’t just go away if we left, it stuck around for a while.

                This was actually the part of the pictures that made me a bit emotional. On top of watching the decline hit I could see in the pictures when the isolation and lack of support began. People I felt close to just stopped coming around and they may argue I could have come to them but it was never that easy once autism took a firm hold. Just getting in car at the wrong time of day to pick up one of my older kids was a challenge. Luckily I did have support on that end and another family went above and beyond to keep things moving along for the big kids. They understood that some things were extremely difficult for me to do with Phillip and stepped in for rides and daily help. Forever grateful to them for that and even though I didn’t spend much time with them myself they felt like family, because they treated the situation like family would.

 At the end of the day and scrolling through having the visual of how life changed so drastically was humbling. I often wonder if my son remembers having abilities before he lost them and I will never know but I was also grateful for the people who just really stepped it up for us without asking them to. I was grateful for the kids and their friends being so dang accepting of how hard interacting with Phillip was at times. People fade away when times get challenging but the people that don’t fade and even step it up above what you expected are one of life’s greatest blessings. We are blessed beyond words and even if those blessings feel limited at times, they really aren’t. They say count your blessings and we should but at the same time it can be the affect of the blessing that really counts.